A Year and a Day

Wow, what a year it's been.  We brought Aaron home from the hospital one year and one day ago.  I remember being so overwhelmed.  He had oxygen through a nasal cannula, and ng tube (through his nose into his stomach) for feeding, and a heart/apnea alarm.  We didn't even have a pulse/ox to measure his heart rate and oxygen concentration.

In the beginning, I made a list so I would remember to do everything each time he needed to be fed, every three hours.  It took me 15-20 minutes to get him ready to feed, 30 minutes to feed, and then repeat just about 2 hours later.  And when that apnea alarm went off, everyone learned to get out of the way, because I would literally go over the top of anyone in my way, without even realizing they were there.  It meant he had already not been breathing for at least 20 seconds.  Fortunately for all, he outgrew his central apnea just after his two month birthday.

  

When he was four weeks old, Aaron was acting strange.  I couldn't tell you what was bothering me, but I didn't like something.  So I took him down to American Fork ER to have him looked at.  I was definitely naive.  I thought maybe they'd give him a breathing treatment and we'd be back in a couple of hours.  Not so.  Lone Peak EMS was called to transport us up to Primary Children's Medical Center where we spent the next 10 days battling heart failure.  We came home with the same equipment, plus a pulse/ox and four new medications, two for his heart and two for reflux.  I had to make a spread sheet to keep up.

We were so blessed to be able to go on enjoying our bug.  We went to a parade, saw Dr. John Carey, had Halloween, and went back for g-tube/nissen surgery.

What we didn't realize was that Aaron's airway was dangerously collapsing.  Looking back, I don't think he would have live another week had we not gone for g-tube surgery when we did.  During it, the ENT discovered the danger and he got a trach three days later.  This has been wonderful for Aaron.  Not only has it allowed him to breathe (small detail) but he could also use his calories to grow instead of fighting so hard just to live.  For those who remember my other babies, most of them were about fifth percentile for weight on their first birthdays.  Aaron is third percentile.  But among T18 kids, he's actually 75th!  Yeah, he's growing well.

Because his vent settings weren't quite strong enough for him, four days after being discharged, Aaron was lifeflighted back to PCMC from our home.  But once we realized how much support he needed, we were on our way again, about nine days later.

Christmas came and went and we got to enjoy a Christmas with Aaron.  This was something I didn't know if I even dared to look forward to.  It was such a wonderful day.  I will never forget it.

The winter wore on and we became frequent flyers with Lone Peak Fire and professional patients at PCMC. The scariest time was in February when he developed pseudomonas pneumonia.Once I quit asking if I needed to tell William to come home (he was in St. George with the older kids for soccer), I started asking how long to expect to stay.  No one would answer me.  I found out when we were being discharged six days later that everyone had expected a several weeks stay.  But Aaron proved them all wrong, again.  Except when he was one week old, I had not, and haven't been, so scared.  I just kept holding his hand and telling him that I wasn't done.  I still needed my bug.  Besides, he had some really cool wheels coming and he needed to stick around to try them out!


Since the weather has warmed up, we've been able to enjoy so many things.  And he has become much more healthy.  In fact, except for his pH study a couple weeks ago, we have been out of the hospital for 13 weeks today.  That's almost three times our previous record!









He's been to the library and the zoo.

We've gone to soccer games, movies, and even a baseball game.  

He even went to the pool today with the kids, although he couldn't get in.  But the boys sure had fun!

And then tonight, another trisomy mom had put together a webinar with Dr. Steve Cantrell about our kiddos and their eyes.  It was so wonderful to be able to listen in and then ask questions as an expert tries to help us.



BUT, on the other hand, there are so many out there who are not able to cuddle and hold their babies.  A friend today, trying to get a grasp on things, was asking how many I know who've lost their babies over the past year.   I truly have no idea.  She asked, "20?"  And I have to admit, I think it's a whole lot more. Trisomy 18 is not an uncommon diagnosis.  One in every 3000 pregnant women will be told their baby is "incompatible with life."  What is less common is to be able to bring them home.  It is very uncommon to hold them for a full year.  We have been so blessed to be able to start to enjoy seconds.  Second Father's Day, soon my second birthday with him, and so many, many more, we hope.

I am also starting to celebrate (?) first birthdays and angelversaries with my trisomy friends.  Tonight, we went outside and sent a beautiful green "Happy Birthday" balloon and bubbles to Addie and tomorrow we'll do it again with a red one for Emalee.  Happy Birthday, angels.  Fly high and send your mommies angel kisses.